Embracing the new family dynamics and looking forward to the future with optimism

Savvy_sewing

Well we have a long way to go and a lot of things to deal with. Ds1 was disruptive and had to be sent home from school. I had to have a meeting with the head teacher, which was very uncomfortable. 

I have agreed that I will need support with all that is going on and she was going to report that to Social Services as it is obvious that I cannot go on dealing with everything with out support and back up. I have also contacted the social worker who last contacted me, to see if I can initiate some sort of help as well.
There comes a time when you just know that you cannot juggle all the balls with out dropping one.
 I don't know what the outcome will be or if I can get any help, or advise but we will have to trust that the right help and guidance will be forthcoming.

hb2

Savvy, I'm glad that you have been able to ask for help. None of us can do everything on our own - and you have to deal with more than most - and asking for help is not a sign of weakness. I hope that things come together to make life more pleasant for all of you.

Artytarty

Well done, that is exactly what I meant in my post about it being a brave thing to admit you need help.
sometimes journals and plans just aren't enough when you are faced with a multi faceted problem and given the boys issues it doesn't look likely that things will get any easier for you.
I hope everyone gets the help they need, and I'm sorry Redlady but DGD was far too young to be capable of making a fully informed decision. She is still a child even now for heavens sake.
of course she was going to want to have the babies!

Edited because I mentioned the wrong poster.
sorry.

Savvy_Sue

Woman's Hour is going to cover the hair pulling out thing on Monday morning, 10 am, and then you'll be able to listen again afterwards. 

NeilCr

Me too post.

Very pleased  to hear that you will be getting support and totally agree with hb2 that it's not a sign of weakness to ask for it. As regular posters will know I was worried about this when it started, That's not to say that I didn't think you should do it - more that having seen the impact on my partner in a somewhat similar situation  I had some concerns about just how difficult it would be for you

The thing that has struck me more than anything is that it has been somewhat chaotic. Your son comes and goes - your daughter is there sometimes,  you are doing this amount of  work - then more, then less etc etc. My partner is very strong on routine (not with me, though) so her granddaughter has a structure (well at least for most of the time!) that she can understand

I, completely, get that this is not easy - especially, when there are financial issues too - but think that your plan of taking the summer off is a really good one.

As ever, I truly, hope this works out for you and the children 

Savvy_sewing

Savvy_Sue said:

Woman's Hour is going to cover the hair pulling out thing on Monday morning, 10 am, and then you'll be able to listen again afterwards. 

Thankyou. I will put it in my Calander 

sarahevie1

Savvy; as a teacher I'm amazed that school have sent DGS1 home. I know that these are unprecedented times but I have never seen that as policy after working in six schools across three different local authorities. I am horrified that you are being called to collect him. If school cannot manage his needs, they should be actively working on a strategy to support him, even if this strategy means him leaving the current school in favour of specialist provision. I know it's not a quick process and places are extremely limited but there are usually meetings and you should be involved in the process and it should be clear what the 'plan' is. 

I'm disappointed to see people suggesting that you shouldn't be sewing. In this case it's often you're damned if you do and damned if you don't. Some will say you shouldn't be working but then they'll always be someone saying you should be working and not claiming benefits. You can't win so just do what's right for your little family. I know how hard it is to juggle three children single handedly whilst working multiple jobs but I wouldn't want to suggest I knew how to manage your situation. I can only be honest and say how you react would not be how I'd handle things but we're all different and until you've walked a mile in my shoes etc.....

SingleSue

I believe that DGS1 is suspected to be on the spectrum? If I'm off base on that one then I apologise but I thought I would give you my experience (2 on the spectrum).

My boys discovered very early on that if they didn't like something, or that if something made them uncomfortable or unsure and had a meltdown, that the school would send them home, or we would leave the supermarket/cinema etc. Doing this though paid them no favours and they would start to purposefully react just so they could go back to their safe space (our house) or to be removed from whatever was causing them discomfort (yes, despite having autism, they could still be just as manipulative as any other child, if not more so.....they are highly intelligent!)

To break this behaviour and to move them on, I started removing them from whatever was causing them discomfort for a short while and then returning them. For example, in a supermarket, I would find a quiet corner where I could calm them down and then we would continue to shop, in the cinema I would take youngest son (he was the most severe) outside into the foyer or outside the main doors, let him calm down for a few minutes but we would then return to the film (I only ever saw the last Harry Potter in its entirety at the cinema, the rest was bits and pieces). This way they started to learn how to cope with it and got us away from the learned behaviour.

It took a while to get the schools on board but we eventually got there. Youngest had his cupboard (the teacher's store cupboard - his choice), middle son had the music room and drum kit when things started to get too much for them. The school even built a special room for youngest with a very expensive calming tent for him to use....he absolutely refused to go in it and returned to his cupboard (much to the horror of the LEA). Sometimes youngest would choose to be outside where there was space, particularly if the classroom was too noisy for him and that was fine too....but each time, they had to return to the classroom.

Sometimes it seems the easiest path is to move the problem away or to give in to it. Too many school's don't understand that by sending an autistic child home doesn't help them, it hinders their progress and makes it impossible for them to develop coping mechanisms, unfortunately, too many parents don't understand either and naturally don't want to see their child distressed and will do anything to get their child away from whatever is distressing them.

It's slow work, things won't change after a few days or weeks or even months. It can take years for the coping skills to be learned and to see progress being made but it does happen, slowly, very slowly but surely.

The boys are now grown up, middle son went from being labelled unteachable, permanently excluded from primary school when he was 8 after goodness knows how many temporary exclusions, even at playgroup and a general nightmare, to a model student , a gentle giant and last year, a university graduate (in music!). Youngest went from being non verbal, doubly incontinent, completely locked away with the prognosis of never being able to attend main stream high school (despite intelligence off the chart), let alone take formal qualifications to just finishing the third year of a four year integrated Masters in Computer Science with a specialism in AI/VR and AR at a competitive uni....oh and he talks the hind leg off a donkey and can now sit through an entire film at the cinema and even feel comfortable enough to fall asleep whilst there!

They still have autism, they still have their challenges but the outlook is an awful lot brighter than I ever thought it would be.

Savvy_sewing

SingleSue said:

I believe that DGS1 is suspected to be on the spectrum? If I'm off base on that one then I apologise but I thought I would give you my experience (2 on the spectrum).

My boys discovered very early on that if they didn't like something, or that if something made them uncomfortable or unsure and had a meltdown, that the school would send them home, or we would leave the supermarket/cinema etc. Doing this though paid them no favours and they would start to purposefully react just so they could go back to their safe space (our house) or to be removed from whatever was causing them discomfort (yes, despite having autism, they could still be just as manipulative as any other child, if not more so.....they are highly intelligent!)

To break this behaviour and to move them on, I started removing them from whatever was causing them discomfort for a short while and then returning them. For example, in a supermarket, I would find a quiet corner where I could calm them down and then we would continue to shop, in the cinema I would take youngest son (he was the most severe) outside into the foyer or outside the main doors, let him calm down for a few minutes but we would then return to the film (I only ever saw the last Harry Potter in its entirety at the cinema, the rest was bits and pieces). This way they started to learn how to cope with it and got us away from the learned behaviour.

It took a while to get the schools on board but we eventually got there. Youngest had his cupboard (the teacher's store cupboard - his choice), middle son had the music room and drum kit when things started to get too much for them. The school even built a special room for youngest with a very expensive calming tent for him to use....he absolutely refused to go in it and returned to his cupboard (much to the horror of the LEA). Sometimes youngest would choose to be outside where there was space, particularly if the classroom was too noisy for him and that was fine too....but each time, they had to return to the classroom.

Sometimes it seems the easiest path is to move the problem away or to give in to it. Too many school's don't understand that by sending an autistic child home doesn't help them, it hinders their progress and makes it impossible for them to develop coping mechanisms, unfortunately, too many parents don't understand either and naturally don't want to see their child distressed and will do anything to get their child away from whatever is distressing them.

It's slow work, things won't change after a few days or weeks or even months. It can take years for the coping skills to be learned and to see progress being made but it does happen, slowly, very slowly but surely.

The boys are now grown up, middle son went from being labelled unteachable, permanently excluded from primary school when he was 8 after goodness knows how many temporary exclusions, even at playgroup and a general nightmare, to a model student , a gentle giant and last year, a university graduate (in music!). Youngest went from being non verbal, doubly incontinent, completely locked away with the prognosis of never being able to attend main stream high school (despite intelligence off the chart), let alone take formal qualifications to just finishing the third year of a four year integrated Masters in Computer Science with a specialism in AI/VR and AR at a competitive uni....oh and he talks the hind leg off a donkey and can now sit through an entire film at the cinema and even feel comfortable enough to fall asleep whilst there!

They still have autism, they still have their challenges but the outlook is an awful lot brighter than I ever thought it would be.

Thankyou.
 I too am concerned about them calling me to get him now! I wonder if I had been   A key worker or someone with an important job that couldn't just drop everything how they would cope.
 I find it very strange that they cannot cope with him, yet they are calling Social Services saying that they are concerned about our home life.
 I have always been able to deal with his troubles and change him from angry to calm and even laughing. 

I don't deny that it is not easy, or that I don't need help, but when I asked her what they were doing about him and his traits they said they cannot do anything until they decide if his reaction is because of home life in the past or if it is autistic traits, which they cannot assess until he is in year 1.
When in year one they will be keeping the 1-1 teacher with him, and then start to tick the boxes the education dept want.
 I find that their excuses for the covid19 being the reason why he is sent home rather disconcerting and feel they should be exploring the idea of whether he should require a special school who can deal with him, no matter what label or reason he is reactive and disruptive.
 I understand that I have a long path to climb with taking on the boys, that the slightest change of course is disruptive but it cannot mean that nothing can be changed. 

I am just going to have to go day to day and do what I can and keep asking for the help they all need.
 I have already made the decision to only sew Tues/Wed/Thurs while they are both in school. Which now means that I cannot sew in the afternoon as Dgs1 is sent home at 1 when his 1-1 teacher finishes.
As at the moment the government have told the Holiday Club cannot happen then I have decided to take all of the school holidays off so I am consistent with the boys and not relying on Dad anymore. Hopefully in July the pubs will return and he will be back in work, so I certainly don't want to rely on him for help. 

His time with the boys needs to be quality time and not just being there and being side tracked by Xbox or telephone with his GF who is permanantly on the other end. Something that I can never understand.

 I feel calmer because my meds are starting to work, the decisions are being made, and I have a plan to work too.
 I hope that I will be able to take the boys out and about as lockdown is lifted we can do more fun things. Slowly obviously as Dgs1 doesn't deal with change easily.

we have a long road ahead of us.

Redlady.....

What a beautiful enlightening post from SingleSue, thank you. 
From what I can see you appear to be doing all of the right things by all the kids SS. Also, I like the way you'll listen to advice from people like Sue, thereby adding to your own knowledge.